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Regular Member

Date Joined Mar 2005
Total Posts : 357
   Posted 3/2/2009 7:15 AM (GMT -7)   
I need to let this out where people will understand..

The middle to end of January I had a really bad flare up and was admitted to the hospital. Since leaving, I am now on prednisone, am off work on disability and am most likely going to be starting Remicade since my current meds don't seem to be working any longer. Just because I am not in excruciating pain like I was, does not mean that I am "all better" now! I still have pain, I have headaches 24/7, I am tired after doing anything especially since I am unable to get any quality sleep, plus all of the side effects from being on steroids, as well as being stressed over just about EVERYTHING... So it really drives me crazy when just about everyone i see/talk to says to me - How are you doing? You look so much better, you sound like you're doing good now, etc.... My stock answer is that I'm doing better than I was a month ago. And yes, I am doing better than I was a month ago, no one could handle being like I was before I went into the hospital for that long, but I am not better. My boyfriend and my family ask when I'm going back to work and when I'm going to be done with my "vacation"; I hear how nice it must be to not have to work and to take naps all day; I am expected to have the house clean, dinner made and errands all run just because I'm "home all day anyway". I feel like crap!!! And I am so frustrated that so many people don't understand that just because I am no longer writhing in pain, this disease does not just disappear.. I would love to not be sick and be able to be "normal".

Thanks for listening.
32 year old female... diagnosed with Crohn's/Colitis at age 16, then with Proctitis in 2005... right hemi-coloctomy April 2001 (removed 12 inches)... currently taking 100mg 6MP, Canasa, acidolpholus, Protonix, tapering dose of 40mg Prednisone... considering Remicade

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 3/2/2009 7:20 AM (GMT -7)   
Kriss it is very frustrating with this disease, because on the outside we look pretty good, but on the inside we feel like utter crap. I am so sorry that you are suffering so. Please know that I will definetly keep you in my prayers and I hope you get feeling better soon. I would suggest you being straight out honest with everyone and just tell them, yes I am feeling somewhat better, but still have a ways to go.

Good luck,
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Veteran Member

Date Joined Jan 2009
Total Posts : 832
   Posted 3/2/2009 7:34 AM (GMT -7)   
i have been sick since oct and home since then i am just now starting to feel okey on some days not all..
I just tell people around me i do what i can do, if i am up to it i clean and walk the dogs etc.
But if i don't feel like it i sleep or rest all day and i never give excuses for it.

I have not been working since oct and now i could be working some days but i have decided to stay home until i am 100% up to going to work.

my friend who had cancer said that to me as soon is i got sick that i should just do the things i can and enjoy it and relax when i am having off days and never make excuses..

Just tell your family the truth and that your health is the most important thing :)

Good luck..
24 year old female
Diagonsed with Crohns disease in December 2008..
Medication - Asacol, Remicade, Entocort

Elite Member

Date Joined Feb 2004
Total Posts : 20577
   Posted 3/2/2009 8:57 AM (GMT -7)   
Pred can also do a number on our emotions, try not to let other peoples concern for you (or lack of understanding what you're going through) get to you, I know it's hard but the aggrivation is not worth it, try meditation or something (maybe use omegas 3-6-9 which can really help with moodiness) because this is pretty much the way things are with having crohn's, it's a rollercoaster of emotions and feeling like crap so you and the people around you are gonna have to get use to it...that's why finding things to help combat your pred moods and such is a step in the right direction.

My bum is broken....there's a big crack down the middle of it! LOL :)

Veteran Member

Date Joined Mar 2007
Total Posts : 4527
   Posted 3/2/2009 9:38 AM (GMT -7)   
Hi We sure do understand and I am lucky that no one was trying to push me.I always was the type that worked hard and pushed myself,too much. Now I do my own thing and not as much as I could but hey it's my life and taking care of my needs is now an important issue.. People cain't tell by looking all the time so perhaps that is there way of hoping or finding out if you are better.. Hang in there and hope you feel better soon... lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still gail

Regular Member

Date Joined Oct 2008
Total Posts : 245
   Posted 3/2/2009 10:07 AM (GMT -7)   
You stick to your guns. You need to look after your health before anything else. At the end of the day, should you rush back into work when not ready, you will only make matters worse for your. Stress is not a good thing whilst you are in a flare. I, Like you, have been out of work since October and my doctor has told me I can forget about going back to work until he has fully cleared me, no if nor buts! Has has told me it will moe likely be towards the end of the year before he will even consider it. I agree with him, our health is effeted bad enough without having to worry about other thing on top of that. Tell you husband and your family that. At the end of the day, it is the pain that they cannot see from inside that is keeping you out of work and not the front that we tend to put on on the outside!
DX November 2008 - after years of searching for an answer
Prednisolone back up to 60mg as of the 24/2  asacol, 3000mg -Omeprazole 40mg (according to doc, it helps with intestine ulcers) - Buscopan 10mg (a daily) Remedeine 30mg-Probiotic

Regular Member

Date Joined Mar 2005
Total Posts : 357
   Posted 3/2/2009 4:41 PM (GMT -7)   
Thank you to everyone for your responses! It's comforting to know that while I wouldn't wish this on anyone, there are other people out there who are living with this disease and understand...
32 year old female... diagnosed with Crohn's/Colitis at age 16, then with Proctitis in 2005... right hemi-coloctomy April 2001 (removed 12 inches)... currently taking 100mg 6MP, Canasa, acidolpholus, Protonix, tapering dose of 40mg Prednisone, Bentil and Percoset... considering Remicade

Regular Member

Date Joined Feb 2009
Total Posts : 62
   Posted 3/2/2009 5:02 PM (GMT -7)   
CD and IBD are very frustrating diseases. You may look fine on the outside but it feels like Freddie Kruger is trying to claw his way out of your insides. If they haven't lived it, they don't get it. I have had a ton of bosses in the past that just didn't get it. And comments about your "vacation" sound like lame attempts at humor.

The most important thing is to take care of yourself. Keep your chin up.
Crohn's Disease - 29 years
Diagnosed at age 10 in 1979
1st ileosecal resection 1989
2nd colon resection 1993
Chronic "D" and arthritis
Chronic rectal stricture with colonoscopy every 3 months to dialate
Insomnia since 1980 - I love my ambien!
SCUBA diver, Master's degree student, college graduate, Pet therapist

Veteran Member

Date Joined Oct 2004
Total Posts : 2088
   Posted 3/2/2009 5:09 PM (GMT -7)   
yeah Boy, do I ever know where you are coming from, Kriss !
My family have got the picture now, but most of them simply used to think of me as just not bothering. In the end I had to almost literally spell it out for them - what I felt when I tried to do things, both physically and emotionally, how frustrating it was to fail at things that seem so minor but turn from molehills into mountains (and actually letting them see you express frustration really seems to make a big shift in attitude there), and just generally letting them know that I hadn't suddenly stopped wanting to do things, it was that I suddenly was not able.
Of course anyone who cares about you doesn't like to think of this option, and they really don't know what the view from inside your gilded cage is like, so you have to graphically show them the downside for them to lose their (for them) blissful ignorance.
Long term, having people around you on a day to day basis who know exactly how you feel and how you are trying to cope with it, makes a huge difference. You are closer to them (if they are understanding) and much less stressed as a result.
eyes But you will always get the occasional friend who is stressed at work and thinking longingly of your "life of leisure", will make the odd comment that ties your guts in knots and leaves you with your teeth on edge, going, "grrr...." ! yeah
idea At which point, methinks, it is good for you and they to have a detailed comparison of what the definition of a "bad day" is. It's amazing how fast ideas readjust when blood and mucus get mentioned. devil

Regular Member

Date Joined Aug 2008
Total Posts : 467
   Posted 3/3/2009 5:50 AM (GMT -7)   
My family has learned to change the subject really fast when blood, guts, pooh or mucus get mentioned. I hope they catch onto a little of it, I fear a few will be dealing with this all too soon.
  Never go faster than your guardian angel can fly! Be Patient And Tough, Someday This Pain Will Be Useful To You I get by with a lotta help from my friends!    
 Crohn's DG 2003 , symptoms included terrible joint and soft tissue pain, just met first cousin who suffers from Reactive Arthritis-explains sooo much. Followed SCD Strictly 2003-06, then modified by adding new things 10-12 days apart to avoid delayed reactions in the form of arthritis symptoms. Scope on 2-5-09 was great! Doc says no symptoms,No scope for 10 years!!!

Becoming undone
Veteran Member

Date Joined Jul 2007
Total Posts : 927
   Posted 3/3/2009 9:02 AM (GMT -7) took the words right out of my mouth. How am I doing today? Oh about the same AS ALWAYS!!! not good. Oh, and I wish I had Sam Kinison's voice to reply with.
My house is a mess, and I can't clean it. My husband doesn't see the mess and unless I get up and do things, he will do nothing either. Yet I know he works and is stressed too. So what do I do? I just want to scream...but who can I scream to? ARGGGGGGGGHHHHHHHHHH!!!!!!!! cry mad sad shakehead
"The earth laughs in flowers"

Veteran Member

Date Joined Oct 2004
Total Posts : 2088
   Posted 3/3/2009 2:05 PM (GMT -7)   
(Massages ear with furry paw) yeah We hear your pain, Becoming undone, really we do. ( wink That was a good one, I could feel the electrons rattling as they carried it... tongue)
That is why I love chopping wood. eyes For a few minutes while I hit things violently with a sharp heavy object, I can forget the difference between what I could be and what I am.
( nono Until I clout my shin, anyway. smhair )
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